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A healthy mind locked inside a frozen body. A cure is near, but we need to keep research funded to perfect it in time for those with FOP. Your role is crucial in preventing one of the world's most debilitating conditions – forever! Hope rests with people like you, people who care. Please become a FOP Friend.

Committee

I have been involved with the FOP community since my eldest son Oliver was diagnosed in 2009. I began to run charity events to raise funds and awareness for FOP in order to support the research team at the University of Oxford. At the time, there was no registered charity in the UK so, along with family and friends, I began the process of setting up the UK’s charity, FOP Friends, which was registered in 2012.

I have also been a Board Member of the International FOP Association (IFOPA)since 2011. I am the representative for the UK on the International President’s Council and I am the current Chair for the IFOPA Strategic Planning Committee. As part of my role as Board Member for the IFOPA, I have travelled around the world to Florida, Boston, Italy, Amsterdam, and Brussels, broadening my knowledge and understanding of FOP. I carry out this charity role alongside my day job as Chief Technology Officer of a UK based software development company.

I originally created this website to keep our supporters updated with breakthrough news about FOP, to thank them for their continued support, and to celebrate all of Oliver’s milestones. This has now evolved into the FOP Friends charity which brings together the UK FOP community. Twitter: @smuglet

Alison Acosta Bedford, Founding Trustee

I'm Alison Acosta Bedford, one of the founding trustees. I am one of Oliver's Aunties, fondly known as Mummy Al by Oliver - a title he gave me when he was two which seems to have stuck! I’m also mum to Edison, 6, and Elise, 3. As a qualified Chartered Management Accountant, I am the Treasury and Investment Manager for Trafford Housing Trust. I use my financial skills to support Chris with the accounts for the charity. Living down the road from Oliver and his family, I am always there to help organise, support and attend fundraisers which are always great fun! I am committed to making FOP Friends a thriving charity and to raise awareness/funds for research into finding a cure for this terrible condition, for Oliver and all his FOP Friends.

Rachel Almeida, Founding Trustee

My name is Rachel Almeida and I’m Oliver’s Auntie. I am Head of Events at a Conference Company. I have worked in events for over 10 years so I am thrilled to put my experience and expertise to good use to help raise much-needed funds for FOP research as well as co-organise the two Symposiums. I was devastated when I found out about Oliver’s condition, but what is important now is that we work hard to raise funds for research and raise awareness of this disease to ensure that Oliver can live a long, healthy and fulfilling life. I am also mum to Ben, 3. Ben loves to spend time with his cousins, especially Oliver, who likes to play at being his 'big brother'. I love spending time with Oliver, who can keep you entertained all day long with his conversation – which never runs out!

Helen Bedford-Gay, Trustee

I’m Helen, Oliver’s mum. I am also mum to two other boys: Leo, 6, and Harry, 3. I may have only become a trustee recently but I have been with the charity since the very beginning. In previous years, I worked ‘behind the scenes’ sending out thank you notes, certificates, medals, and organising different fundraising events. Unfortunately, since Oliver was diagnosed, there have been more young children in the UK who have received the same news. I offer new parents a support network of friends who understand their distress and can offer guidance during the incredibly difficult times. When I’m not working for the charity, I am an experienced teacher. Through this role, I can offer practical guidance and support for parents regarding subjects such as mainstream education for their child. FOP and the charity have become part and parcel of our family life, but when they find that treatment for Oliver and his friends, it will all have been worth it.

Fiona White, Trustee

My name is Fiona White. I’m a close friend of Christopher and Helen Bedford-Gay but the boys fondly call me Auntie Fona! I live in Manchester and I am Senior Leader at a primary school. Having been a close friend of the Bedford-Gay family for many years, I was devastated to learn about Oliver’s condition. Oliver is a very charismatic boy and the time I spend with him is a lot of fun. He makes me laugh and is great company! In my spare time I enjoy keeping fit which has helped me a great deal in training for energetic fundraising activities. I am very committed to Oliver and the charity. I look forward to using my professional skills to help FOP Friends grow in strength, in order to help Oliver and others affected by this terrible condition, go on to lead long, fulfilling, and healthy lives.

Nicky Williams, Trustee

My name is Nicky and I am mum to Isla, 2. Isla was one of the youngest children to be diagnosed with FOP. After coming to terms with the initial shock of diagnosis, I began fundraising to support the research into treatments and a cure for my little girl. Currently, I work part-time as a Marketing Campaigns Manager for Avaya. I use my business contacts to gain support for the charity from a number of large companies and organisations. I am proud to be the latest Trustee to join FOP Friends. I feel passionate about raising awareness of FOP and raising funds to get that cure which is in all our dreams. Twitter: @waynicola

John Lever, Trustee

As a dad, when I heard about Oliver, I wanted to do what I could to help. As a first step I produced a video through my creative company. I enlisted the help of Stephen Fry to narrate it and subsequently tweet it to his millions of followers on Twitter. I'm now enjoying exploring some exciting new ideas to help FOP Friends raise awareness and funding. It's a privilege to be part of such an inspiring team, on such an important mission.